<<Disclaimer: Verify this information before applying it to your situation.>>
Since recently being diagnosed with peripheral neuropathy in my legs, I
requested comments as to the possible progression. Thanks so much for
the 24 responses that I received which are summarized below.
1) 2 responses indicated that they take Desiprime, an antidepressant.
One person has worsened over the years, the other has had some relief
but developed other sensations up to the knees plus fatique and lethary.
2) 1 post stated that her dr. said Celiac was not causing the PN, but
she also was not staying GF. She still plays tennis.
3) 2 have SjS and Celiac, and take Neurontin. In 1, symptoms
completely went away.
4) One post suggests products made by Nikken that combine magnetic and
far infrared technologies. Contact 5pillars.com/micki for further info.
5) 3 questioned what PN is. They seem to have symptoms similar to
mine.
6) 6 people stated that vitamin deficiencies were likely the cause and
suggested either or both B-12 injections, B-6, inositol bound niacin. 2
stated that the lack of nutrition causing the problems would clear up
after a GF diet.
7) 1 stated that the symptoms might not be helped by GF diet, that
there are a wide variety of symptoms that can lead to death.
Recommended Peter Green at Colombia-Presbyterian Medical Center at NY, a
CD expert who works with a neurologist.
8) 1 person stated that problems with balance can be a problem with
depth perception following treatment for retinopathy with laser. Middle
ear can also cause balance problems which should be checked.
9) 1 post has a son who developed PN after going GF. Dr. tested for
B12 deficiency but apparently not the cause. Dr. stated probably
related to Celiac but didn't know how. Post also stated that nerves
take time to heal, but should not get worse.
10) 1 post had a husband diagnosed with CD at 3. Has leg atasia and
balance problems to date at 25.
11) 1 suggested giving up dairy next and recommended a Paleolithic
diet. Further information at paleodiet.com or paleofood.com.
12) 1 started the inositol bound niacin mentioned above, and his PN has
gone away. He sent further info. that he received from a dr. on the
list. It was so informative that I have only summarized it in part as
follows. Correct me if I'm in error, but from the below, Pellagra is a
deficiency of niacin.
>>Pellagra is not usually mentioned as related to CD, but vitamin
deficiency is apparently a common celiac problem. Pellagra is a known
cause of peripheral neuropathy (http://www.medscape.com/medscape/
PhysicianAsst/AskExperts/2000/09/PA- ae17.html) and peripheral
neuropathy is known to be a symptom of CD
(http://www.celiac.com/frequent.html#symptoms). A good discussion of
pellagra and niacin can be found at hpp://www.bookman.com.au/vitamins/
niacin.html, though the article does not mention CD.
Carol Lydick (http://maelstrom.stjohns.edu/CGI/wa.exe?
A2=ind9903C&L=celiac&P=R186)
quoted the following about pellagra from a
Dr. William Kaufman MD. PhD. in a Time Life book: "When I began
practicing medicine in 1941, before the compulsory enrichment of cereal
products, I realized that there was----- ---Patient after patient coming
in with a group of symptoms which were quite similar----such as
inability to concentrate, depression, irritability, joint complaints,
excessive fatigue, bloating and intestinal complaints
-----Very soon I recognized that this strange syndrome was probably a
form of pellagra that had not yet reached to degree of severity to cause
the classic combination of skin rash, diarrhea and dementia
(schizophrenia type symptoms), that is typical of niacin deficiency"
Many of these complaints seem to be common CD symptoms and I wondered if
some that I have experienced, particularly bone pain, could be related
to niacin deficiency. I was diagnosed with CD about 1932 after becoming
a banana baby. Though it was thought that I was cured, I continued over
the years to have many of what I now know are CD related symptoms. I
gradually resolved these over several years by going gluten free. By the
time I got Internet service and earned the true nature of CD I had been
gluten free for some time and blood tests and a biopsy were negative.
The physicians I have had over the years seemed to believe the only
symptom of CD is diarrhea and since I did not have diarrhea I was told
that I did not have CD. As recently as 2 years ago one physician
asserted that blood tests were not available for CD. About 2 years ago I
had to stop taking my gluten-free daily multi-vitamin because the bottle
stated that it should not be taken with an antibiotic being prescribed
by my primary care physician for an infection. A pain that I had
suffered in my left foot for many years suddenly got worse. It appeared
that something in the vitamin pill had been moderating the pain. After
reading the above on pellagra I suspected niacin. On taking a
supplemental dose of niacin the pain quickly subsided and is now gone
when I take a self-prescribed dose of niacin. I have found by trial and
error that by taking one Nature's Life One Daily Multiple at breakfast
plus 25 mg of niacin for lunch, dinner, and before bed (I split a 100 mg
table of Nature's Life niacin) that I can completely relieve the pain.
If my foot starts to hurt I invariably find that I have forgotten a
dose. I recently tried to switch to Centrum Silver for thevitamin pill
and the pain quickly returned so I have gone back to Nature's Life. I
also experienced fatigue with the Centrum that resembled past CD related
fatigue. I have no financial interest in either Centrum or Nature's
Life. A podiatrist had previously diagnosed the pain in my left foot as
a Morton's Neuroma, a benign tumor of a nerve running between the second
and third metatarsal in my left foot. He gave me a cortisone shot, which
relieved the pain for a few days. After the pain returned he stated it
was caused by arthritis. The only relief that he offered after two more
cortisone shots in the joints was a Tylenol or nonsteroidal anti-
inflammatory drug. I am no longer able to take these so was left with
pain that made it difficult to walk. Because the podiatrist had insisted
that the pain that remained after he treated the Morton's Neuroma was
arthritis, I at first ssumed the niacin was relieving arthritic pain in
my foot. However, I noticed that the niacin did not relieve other
occasional joint pains not relieved by glucosamine and chondoritin. The
glucosamine appeared to partly relieve the foot pain. This suggested to
me that the pain was probably not from arthritis. Incidentally the
glucosamine has mostly relieved pinched nerves in my neck by improving
my neck joints. After my wife recently developed peripheral neuropathy
in her feet (she has tested positive for CD in blood tests and negative
by biopsy), we learned her pain is caused by nerves. I then realized the
pain in my left foot that is being relieved by niacin is probably nerve
pain and not arthritis. The pain includes characteristic burning
associated with peripheral neuropathy, but which does not occur
elsewhere with my arthritis pains. I had told the podiatrist that the
pain still seemed to be at the site of the nerve, but he insisted he
could feel that it was in the joint. Gradually over several months the
nerve is no longer sensitive to touch and appears to have gradually
healed.The fact that my nerve pain is relieved by 125 mg of niacin
indicates to me that I have a daily niacin deficiency that exceeds the
USA RDA of 16 mg. Because the pain was present before and after I went
gluten free a direct connection to CD cannot be made. However, a
gastroenterologist told me that vitamin deficiencies are common in CD
patients even after they are gluten free and test negative for CD.
Sorry so long, but the above information was so interesting.
I am so thankful for this site! Thanks to all,
Sandra in Texas
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